“I describe my energy levels as batteries”

48-year-old retired nurse Joanne Worley shares how MS fatigue has affected her life

I first felt the affecting me about a year into my multiple sclerosis (MS) diagnosis. It impacted my life by me not being able to spend quality time with my children in the way I used to, such as having days out at the park.

I feel the fatigue daily now. I have to forward plan my week, getting jobs done in the morning when I am feeling the most energetic. The difference this fatigue has to normal tiredness is the impact on my physical levels of energy. If I am just tired, I can rally round and get on. But MS fatigue affects lots if things, such as balance and dizziness, and how much I can partake in life. It’s taken a lot of adapting.

I was medically retired in 2018. This was mainly due to the stress of my career and juggling children and everyday life.

When I first suffered my MS fatigue, I completed a fatigue course with the occupational therapist my MS nurse referred me to. I have also completed an MS course through the MS Society.

I found these courses helpful in understanding why I am fatigued. They also helped me to not feel so guilty when I can’t do things and I feel like I let family down. I found describing my energy levels as batteries helpful. So, I start with 20 batteries. Having a shower uses two batteries, and so on.

I have started cooking and freezing meals so that I have food that’s healthy and available. I do this when I have a battery to spare.

I attend a local gym three times a week which definitely helps my fatigue, and also keeps me fit for now and the future. I attend a local neuro centre and saw the physio for future-proofing my mobility. I use this when at the gym. Days when I feel unable to attend the gym I will focus on basic yoga and core exercises.

When I was first diagnosed, I felt a bit like I’d been given a life sentence. But with a good team around me, I feel more positive about my MS.

If you or someone you know is living with MS fatigue, our booklet is bursting with information about this symptom. We’ve just launched our revised Fatigue Choices booklet – check out the latest information here.